PANDAS/PANS Advocacy and Support Announces August 2016 Grant Recipients

PANDAS/PANS Advocacy and Support Announces August 2016 Grant Recipients

Posted by wnawara, Community Contributor

Lesley Swain and her boys, Bentley Swain and Jesse Chase-Alone

Lesley Swain and her boys, Bentley Swain and Jesse Chase-Alone (Posted by wnawara, Community Contributor)

Community Contributor wnawara

NAPERVILLE, IL, August 29, 2016 - PANDAS/PANS Advocacy and Support, a non profit organization located in Naperville, IL dedicated to meeting the needs of families battling Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS/PANS), successfully affirmed its mission by granting another round of monetary grants. PANDAS/PANS Advocacy and Support is pleased to announce that five grants were awarded to families throughout the US in August 2016. Grant recipients include the Swain Family of Missouri, the Manno Family of Colorado, the Bartush Family of Oregon, the Stromer Family of Illinois, and the Corey Family of California. The grants support these families' efforts to secure medical treatment for their children with PANDAS/PANS.

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and PANS (Pediatric Acute Onset Neuropsychiatric Syndrome) are a type of Autoimmune Encephalitis triggered by common bacterial and viral infections that result in abrupt onset obsessive compulsive disorder (OCD) and/or motor disturbances such as tics. This disorder can can be neurologically debilitating due to inflammation of the brain. Symptoms frequently seen are mood swings, extreme hyperactivity, severe anxiety, and changes in sleep patterns and urinary frequency. Educational skills decline and school attendance can drop off sharply. Parents report that their children have changed dramatically within days and that their family life has been altered drastically. Sadly, children are often misdiagnosed for great lengths of time.

The recipients of the PANDAS/PANS Advocacy and Support grants acknowledge the critical impact the grants can have on the outcomes of their children's health. Often families must pay out of pocket due to the lack of a full range of insurance coverage options for the most effective methods of treatment, such as long term antibiotic usage, cognitive behavioral therapy, and IntraVenous ImmunoGlobulin (IVIG) treatments. In addition, many families must travel great distances to find physicians confident in treating the disorder. While both awareness and knowledge of Pediatric Autoimmune Neuropsychiatric Disorders are are increasing everyday, families still find themselves unprepared for the emotional and financial toll it can wreak. Lesley Swain hopes that the grant money will help her get her sons to the doctors they need to see, "We are going to try and get a vehicle with the grant money so my boys will be able to make it to all their appointments." Grants will continue to be awarded to to families struggling with the many effects of PANDAS/PANS twice yearly, in February and August. Applications are accepted throughout the preceding months of January and July and can be found on the organization's website at www.pas.care. All families with the diagnosis in the US are eligible to apply.

PANDAS/PANS Advocacy and Support (PAS) was established in 2011 to offer support groups to families and create public awareness of Pediatric Autoimmune Neuropsychiatric Disorders in Illinois. This local group has grown to include over 500 families and has recently expanded its role nationwide to include advocacy, grant giving, and collaboration with other PANDAS/PANS groups and medical institutions. Please visit our website at www.pas.care and "Like" us on Facebook at https://www.facebook.com/PAScares/.

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